Tuesday, October 30, 2007

The California Legislative Blue Ribbon Commission on Autism has published a report with recommendations for legislative action in 2008. The commission's 93-page report (a PDF file), presented in September to Gov. Arnold Schwarzenegger and the state Assembly, issues findings about Californians with autism spectrum disorders, describes the presence of autism services in the state and makes recommendations in seven areas, from early intervention to post-secondary education, from health insurance to teacher training, for addressing what it calls "the ASD public health crisis."

This is a big deal for parents and families beyond the state capital in Sacramento; I would expect advocates for autism services across the country to follow closely what happens in this effort, and to glean both insights and lessons from the recommendations and resulting changes to autism services in California. Autism Bulletin readers are a busy group, but if it's possible for you, reading the commission's report is a good use of time to familiarize yourself with issues and challenges families need to address as they support people with autism and advocate for them. It's a quick education in how a big state looks at the autism issue, how it organizes to address autism needs, and how it frames approaches to important issues like health insurance and education.

Convened for two years after a 2005 state resolution, the panel's report notes that it has sought and won legislative approval to remain active for another year, until November 2008, so it can monitor the progress of work on its recommendations.

The Commission's Seven Recommendations: What They Cover

As in other states (such as Washington and Kentucky) that have formed important autism study groups, the California panel takes a comprehensive approach to providing support services to a growing number of citizens diagnosed with autism. (The California report also asserts the relative strength of services and research institutions compared to other states in the U.S.) The panel's recommendations call on California to:

1. Expand early diagnosis and intervention. The panel calls for establishing a demonstration project to serve as a model for expanding the state's ability to identify autism cases early. "the demonstration project should focus on distressed communities; ensure the timely diagnosis of and intervention for children with ASD; improve collaboration among providers; provide support to families and caregivers; establish a seamless system for service delivery between regional centers and local education agencies; and promote smooth transitions" from birth to kindergarten.

2. Enact health insurance legislation. The panel calls on the state to pass laws, regulations "and other policies to ensure appropriate and equitable coverage for ASD by private health plans and insurers."

3. Establish a muscular public awareness campaign. The panel calls on California to "implement a statewide public awareness campaign on ASD" tied to efforts by the state's Department of Public Health to improve access to autism services.

4. Increase the supply of trained educators for students with autism. This recommendation refers to teachers, paraprofessionals and other school-based staff who need specialized training to be effective.

5. Address the need to resolve disputes about autism services between families and school districts. The report's executive summary calls on California to "empower families and local education agencies to collaborate in establishing appropriate and effective individualized education programs for children with ASD," adding that the state needs to review the process for resolving such disputes.

6. Expand the educational and employment options for youth and young adults with autism. This recommendation includes broadening existing post secondary education programs and setting up new technical education models that can lead to employment with supports. The panel also urges the state to "expand innovative community-based approaches to supported employment, transportation, social-recreation programs, and housing for the ASD population."

7. Train emergency workers and first responders about helping people with autism in a crisis.

Endorsement by Autism Speaks Chapters, Focus on Health Insurance

The commission published its report in September, as required by law. On Oct. 22, representatives for the Autism Speaks chapters in San Francisco and San Diego issued statements endorsing the commission's report. You can read a copy of the San Francisco Autism Speaks chapter's press release by clicking on the web link. The statement zeroes in on the health insurance issue as a key ingredient of the commission's recommendations:

"Autism Speaks commends the Commission and its staff for reaching out in countless ways to parents and advocates across California and for listening to our concerns about appropriate and equitable health care insurance for children with autism," said Kristin Jacobson, Chapter Advocacy Chair, Autism Speaks California. "We believe that all health plans and insurers should provide a full range of services for children with autism, including intensive behavioral treatment, such as Applied Behavioral Analysis, a highly effective, evidenced-based intensive behavior modification therapy."

Thursday, October 25, 2007

The Autism Society of America today published a helpful list of contacts for people with autism spectrum disorders and their families affected by the wildfires raging through the San Diego area. The society urges families needing support to contact local chapters and announced:

ASA and its local chapters in southern California stand ready to assist families and individuals with autism spectrum disorders in finding the resources they need to help them find shelter or assistance during this crisis. ASA's national phone number is 1-800-3Autism.

Monday, October 22, 2007

The Massachusetts Autism Division has unveiled a $2 million model program to provide up to 80 low-income children with autism spectrum disorders with home- and community-based services—as much as $25,000 per year for three years.

Children up to age 9 are eligible for the one-on-one services. Families must apply for the program which applies to children under age 9 who meet the income eligibility requirements of the state's MassHealth state health insurance program for low- and moderate-income families. An announcement from the state says:

The funding for this new Waiver Program is limited and the number of applicants that can be served is also limited. The Autism Division expects that up to 80 low-income children will be able to participate at this time. This Waiver Program will provide one-to-one interventions to help children with severe behavior, social and communication problems through a service called Expanded Habilitation, Education. This service is expected to occur in the child’s home under the supervision of trained clinical staff and will use an intervention method as identified by the family and clinician such as Applied Behavioral Analysis (ABA), Floor Time or a Communication Model. The waiver will also provide related support services such as community integration activities and respite.

The purpose of the Waiver Program is to help eligible children with autism to remain in their homes and actively participate in their families and in their communities. The waiver will serve up to 80 children under the age of 9, with an autism spectrum disorder who meet the clinical criteria for the Waiver Program, as well as, MassHealth financial eligibility, which is based on family income. The Waiver Program provides up to $25,000 worth of services and supports, per year, based on the assessed needs of the child. This Waiver Program is for a 3 year period of time and children are reassessed every year to ensure they continue to meet the eligibility criteria for the program. Participation in the waiver program ends, regardless of the start date, when the child reaches his/her 9th birthday.

One advocate I spoke to mentioned that there has been some commentary on online discussion forums about this program, about how it's a shame that this program is modest and applies only to low-income families. The advocate also mentioned that there were parents who cited the acute need for families of very modest means to access vital autism-related services. Both are right.

Wednesday, October 17, 2007

Advocates for people with autism spectrum disorders should take a look at the work going on at the Kansas Autism Task Force, where a group of citizens appointed by the governor have been working to identify the scope of the autism challenge facing the state and what to do about it. In particular, the panel's insurance subcommittee is worth watching because it is tackling the thorny issue of how to share the burden for autism services by engaging the insurance industry. In a report on its September 20 meeting which you can read here in a PDF document, the group states:

Two important points were stressed at the outset of the subcommittee meeting:

1. Early intensive intervention provides dramatic cost savings over the lifespan of an individual with autism.

2. The intent of this subcommittee is not to suggest that the entire burden of financing early intervention be placed on the insurance industry alone. The magnitude of the autism epidemic necessitates that this be a shared responsibility.

This statement asserts two important ideas for both advocates and policy makers: that it's cost effective to provide early childhood autism services because it saves money later; and that there's a collective responsibility for helping people with autism.

The meeting report discusses related issues, including:

* The difficulty that families can have in getting coverage for autism services (one parent, the chief operating officer of a health insurance organization, had to spend more than a year appealing denial of speech therapy coverage by Blue Cross Blue Shield of Kansas).

* Notes from a 2004 report from the Kansas Department of Insurance saying autism services coverage would have "no meaningful impact" on overall health care costs in the state.

Michael Wasmer, a member of the Kansas task force and a founder of the Kansas Coalition for Autism Legislation, has issued a call for more testimony from representatives from the health insurance industry for the panel's next meeting on October 25.

The Kansas panel is tackling not just health insurance, but all the important issues—identifying the people affected by autism, best practices for providing services, professional development for those providing services, school-based services and funding—with a goal of recommending legislation to improve availability and accessibility of autism services. You can visit the task force's website to see a summary of its second meeting by clicking here.

Sunday, October 14, 2007

Researchers at the Oxford University Department of Psychiatry announced the opening of a special imaging center to study the brains of both children and adults with autism spectrum disorders. The university is calling the Oxford Neurodevelopmental Magneto-encephalography Centre the world's first brain imaging facility devoted to studying autism. It is located at the Warneford Hospital in Headington, England, about 56 miles west of London.

The magnetoencephalography technology, using a machine like the one pictured above, allows researchers to create a "window on the brain" of its subjects, allowing scientists to watch brain activity as it changes from moment to moment, of an individual subject while they sit upright and perform tasks.

The brain scanning equipment costs 2.3 million British pounds, about $4.7 million at today's exchange rate. A Swedish medical equipment maker called Elekta makes this machine. (Note to e-mail subscribers: you can also see a photo of the machine here.)

This project fits into a broader effort to understand brain anatomy and genetic components of autism spectrum disorders, one of several themes of autism research ongoing around the world. Other notable research efforts are underway to examine potential environmental factors in the incidence of autism. You can read about past coverage of these and other notable research studies by going to Autism Bulletin's archives for articles labeled "research," or by clicking here.

Oxford unveiled plans for the brain imaging center in January. The university's press release emphasizes the need to make subjects comfortable while researchers monitor their brain activities. One look at the machine's large apparatus shows this could be a challenge with young children; notably, the Oxford facility is supposed to look less imposing. More from the press release:

The scanner will help Oxford University's autism research group, led by Professor Anthony Bailey, to understand the brain basis of autism. It will also be a resource for researchers from all over the UK.

MEG (Magnetoencephalographic) scanners provide a 'window on the brain': they allow doctors and researchers to view brain activity whilst a particular task is performed, showing both where and when different parts of the brain are active. The scanner measures the tiny magnetic fields generated by brain activity.

'MEG is ideal for studying autism,' says Professor Bailey. 'The scanner is silent and safe, children and adults can sit upright, and researchers are able to sit next to them, making it a stress-free experience. Imaging the brain allows us to compare the brain activity of someone with autism to that of someone without autism.'

MEG scanners allow the patient or subject to sit upright and unenclosed. MEG scanning also provides millisecond time resolution: in other words, it shows how brain activity is changing from one moment to the next.

Until now, Professor Bailey's team has traveled to Finland to measure brain activity, either taking with them adults with autism from the UK, or studying affected Finnish children. 'The new centre in Oxford will transform our research into the brain basis of autism,' he says. 'It will also be a resource for other autism researchers.'

Professor Bailey and his team's MEG research in Finland has already shown that human faces are processed in a quite different way in children and adults with autism. 'The next step is to understand why there is this difference in processing and how it changes with development,' he says. 'Ultimately we aim to develop more effective treatments.'

The £2.3m MEG Centre has been designed as a relaxing environment for children with autism, with plenty of exposed wood, natural light and open space. It contains a 'practice' scanner which allows children to get used to the process without using up valuable time on the active scanner.

Studies using the MEG scanner will form one part of the work carried out by the autism research group. The team leads an international study to identify autism susceptibility genes; uses several imaging techniques to understand the brain basis of autism; and is investigating how computer-generated worlds can be used to develop social skills. The team is currently looking for children and adults with autism to take part in their studies. Individuals and families interested in learning more about, or helping with, research by the group can contact them on autism.research@psych.ox.ac.uk.

Wednesday, October 10, 2007

The United States Supreme Court today issued a split decision in the case of a New York City family who sought reimbursement for their disabled son's private school tuition after rejecting a public school placement.

The 4-4 tie vote means that a lower court ruling in favor of the family stands, and that New York City will have to reimburse the family for tuition at the Stephen Gaynor School for children with learning differences in Manhattan. Only eight justices heard the case; Justice Anthony Kennedy did not take part in the case, but the court did not explain why he was excluded.

The case, Board of Education of the City School District of the City of New York v. Tom F., on behalf of Gilbert F., raises an important question in the ongoing tension between school districts and families with disabled children who disagree on how best to serve the student's needs under the law which requires every student receive a free and appropriate public education.

The question in this case: if the family and school district disagree on whether a school district can meet a student's needs, does the family have to try out the school district's plan anyway? And if the family chooses not to do so, and enrolls the student in a private school, does that action mean the family gives up its legal right to seek reimbursement for the private school tuition?

New York City's lawyer's argued yes, the student has to try out the public school program. The Freston family's lawyers argued no.

This case has received a lot of attention in the media in part because the "Tom F." in the case is a well-known businessman, former Viacom CEO Tom Freston; most media accounts have noted how Freston's wealth contrasts with the overburdened city school system.

Because the court issued only a statement that said, "The judgment is affirmed by an equally divided court," we don't know which justices sided on the Freston's side, or the city's side. Even the special education law experts at Wrightslaw.com noted in this summary of the Freston case and attorneys' oral arguments before the Supreme Court on October 1 that it appeared the court was divided on the questions in the case.

Autism Speaks was a player in the case filing a legal brief at the Supreme Court in support of Gilbert F. and his family (Gilbert F.'s disability was not identified). Every parent of a child with an autism spectrum disorder who has to go through the process of working out an Individualized Education Prorgram (IEP) knows there are options school districts and parents discuss about how to educate any given student—and little time to waste in trying out a program that might cause an autistic child to regress. An Autism Speaks statement added:

"Today the court affirmed the danger of making students try out an inappropriate school district program. Students who need early intervention do not have time to waste," said Gary Mayerson, an Autism Speaks board member and founder of law firm Mayerson & Associates. "School districts need to fulfill their statutory responsibility to create an appropriate IEP for every child with a disability or to pay for that student to attend an appropriate private school."

Autism Speaks filed an amicus brief in the case, focusing on the critical nature of early intervention for children with autism. The brief explained why parents of children with autism should not be forced to "try out" demonstrably inappropriate and ineffective IEP programs during what may well be a relatively narrow window of opportunity.

Freston said in a news release that he believed the Supreme Court had affirmed that "children with learning challenges have a right, without jumping through hoops, to attend schools capable of providing them with an education that truly accommodates their individual requirements."

School districts around the nation were following this case, The New York Times notes. The lead New York City Schools lawyer told the Times for this blog post that the Supreme Court's left the main questions in the case unanswered, and he hoped the court would find another case to rule on the issue in the near future.

For his part, Freston has donated reimbursement funds to the city's public schools, to help with remedial reading programs, for example.

Saturday, October 06, 2007

Who has done important work to help people with autism spectrum disorders this year? Which groups or individuals have advocated for children, supported adults with autism? Autism Bulletin is collecting nominations for the second annual list of advocates of the year, to be published in December. And we need your help.

Then nominate who you think deserves recognition this year. Though Autism Bulletin is based in the United States, nominees worldwide are encouraged.

This has been another big year for news in the autism community, with action in education, research, the courts, legislative halls and media coverage. Let's celebrate some important accomplishments from the year.

You can post a comment at the end of this blog post to make your nomination. You also can write to me at michaelsgoldberg AT yahoo DOT com. Explain why you are nominating this person or group, and how people can learn more information about them (websites where they are based and media coverage of their efforts are good examples of this). Personal testimonies are encouraged. Thank you for your participation.

Thursday, October 04, 2007

The National Institutes of Health today announced federal funding for 22 research centers which will collect data and recruit families to participate in a study designed to examine the effects of environmental and genetic factors on children's health. Researchers will be looking to understand how these factors relate to children developing autism, birth defects, heart disease and obesity.

The announcement's citing autism as a key national health issue would appear to reflect the mainstream concern that autism spectrum disorders have become in government research circles.

The National Children's Study will follow a sample of 100,000 children from across the United States from birth to age 21. The study will be "seeking information to prevent and treat some of the nation's most pressing health problems, including autism, birth defects, heart disease and obesity," the NIH said in a statement.

The goal is to create a sample of children that reflects the makeup of the nation's population. A key aspect of the project, based on the statement released today, is to bring staff on board who can recruit people in communities around the country to participate in a government study. Yvonne Maddox, deputy director of the National Institute of Child Health and Human Development, said in today's statement: "Building trusting relationships with community leaders will be critical to the success of the study's recruitment efforts," and noted that researchers will work to build relationships with local community groups and health care providers, to explain the potential benefits of the study.

"The National Children's Study is poised to identify the early antecedents of a broad array of diseases that affect both children and adults. Such insights will lead to the means to successfully treat and even prevent conditions that to date have defied our best efforts," Dr. Elias A. Zerhouni, the NIH director, said in a statement.

Congress set aside $69 million for the project this year. The research study is adding 22 new study centers to an existing base of seven research centers set up in 2005. In addition, the NIH unveiled a list of 105 study locations in 2004.

The 22 locations announced include:

Providence County, Rhode Island: Brown University with National Opinion Research Center and Women and Infants Hospital .

Schuylkill County, Pennsylvania and New Castle County, Delaware: Children’s Hospital of Philadelphia with Drexel University, Philadelphia Health Management Corporation, University of Pennsylvania, Pennsylvania State University, Schuylkill County Commissioners, Pottsville Hospital/Warne Clinic, University of Delaware Christiana Care, and A.I. DuPont Institute Hospital for Children.

DeKalb County, Georgia and Fayette County, Georgia: Emory University with Morehouse School of Medicine and Battelle Memorial Institute.

Wayne County, Michigan: Michigan State University with Henry Ford Health System, University of Michigan, Wayne State University, and Michigan Department of Community Health.

Nassau County, New York: Mount Sinai School of Medicine with Columbia University College of Physicians and Surgeons and School of Public Health, University of Medicine and Dentistry of New Jersey, Environmental and Occupational Health Sciences Institute, and Battelle Memorial Institute.

Cook County, Illinois: Northwestern University with University of Chicago, University of Illinois at Chicago, National Opinion Research Center, and Children’s Memorial Hospital.

Macoupin County, Illinois and St. Louis, Missouri: St. Louis University with Southern Illinois University (Schools of Medicine, Dentistry, and Nursing), Washington University School of Medicine, and local office of Battelle Memorial Institute.

Sacramento County, California: University of California, Davis with Sacramento Department of Health and Human Services and Battelle Memorial Institute.

San Diego County, California: University of California, Irvine with San Diego State University; University of California, San Diego; California State University, San Bernardino; Loma Linda University, and California State University, Bakersfield.

Honolulu County, Hawaii: University of Hawai'i at Manoa with Kaiser Permanente; Johns Hopkins University; and University of California, Irvine.

Worcester County, Massachusetts: University of Massachusetts with Clark University, National Opinion Research Center, and Harvard University.

Ramsey County, Minnesota: University of Minnesota with National Opinion Research Center, Health Partners Research Foundation, and St. Paul-Ramsey County Department of Health.

Hinds County, Mississippi: University of Mississippi with Tougaloo College, Jackson State University, Mississippi Department of Health, and Community Outreach for Health Awareness.

Valencia County, New Mexico: University of New Mexico.

Rockingham County, North Carolina: University of North Carolina at Chapel Hill with Duke University, Battelle Memorial Institute, and McMillan and Moss Research.

Marion County, West Virginia and Westmoreland County, Pennsylvania: University of Pittsburgh with National Opinion Research Center, Pennsylvania State University, and University of West Virginia.

Bexar County, Texas: University of Texas Health Science Center at San Antonio.

Cache County, Utah: University of Utah with Utah State University.

Los Angeles County, California: University of California, Los Angeles with RTI International; Cedars Sinai Medical Center; and University of Southern California.

King County, Washington: University of Washington with Fred Hutchinson Cancer Research Center and Seattle/King County Public Health Department.

Tuesday, October 02, 2007

The New England Journal of Medicine published an editorial in its September 27 issue that provides useful background information on the ongoing controversy over a mercury-containing vaccine preservative called thimerosal and whether it causes autism in vaccinated children. The piece is worth reading because it asserts that a botched effort by the American Academy of Pediatrics to assure the public that vaccines are safe has led to the problems we face now: a reduction in the number of children immunized, a distrust in scientists, and lengthy court battles.

The article leads a reader to conclude that no matter how many scientific studies fail to find a causal link between thimerosal to neurological disorders (and The New England Journal publishes the latest study in the same issue), the scientific and medical establishment will continue to face questions, criticisms and doubts on this issue.

In "Thimerosal and Vaccines—A Cautionary Tale," Dr. Paul A. Offit, chief of the Division of Infectious Diseases at Children's Hospital of Philadelphia, notes that the public took little notice of an amendment in the November 1997 bill reauthorizing the Food and Drug Administration, which required the FDA to "compile a list of drugs and foods that contain intentionally introduced mercury compounds and [to] provide a quantitative and qualitative analysis of the mercury compounds in the list." Offit explains:

Eighteen months later, in May 1999, the FDA found that by 6 months of age, infants could receive as much as 75 µg of mercury from three doses of the diphtheria–tetanus–pertussis vaccine, 75 µg from three doses of the Haemophilus influenzae type b vaccine, and 37.5 µg from three doses of the hepatitis B vaccine — a total of 187.5 µg of mercury. The use of mercury in vaccines wasn't new; thimerosal, an ethylmercury-containing preservative, had been used to prevent bacterial contamination since the 1930s.

To determine whether the amount of mercury in vaccines was safe, FDA scientists examined safety guidelines from three sources: their own agency, the Environmental Protection Agency, and the Agency for Toxic Substances and Disease Registry. They found safety guidelines for methylmercury (environmental mercury), but not for ethylmercury (thimerosal). Although these two molecules differ by only one carbon atom, the difference isn't trivial. Ethylmercury is excreted from the body much more quickly than methylmercury and is therefore much less likely to accumulate. For this reason, the safety guidelines that had been established for methylmercury weren't likely to be predictive of the safety of ethylmercury.

In mid-June 1999, FDA scientists held a meeting to discuss their findings. Present were representatives from the Centers for Disease Control and Prevention (CDC) and the American Academy of Pediatrics (AAP) — the organizations that are principally responsible for making vaccine recommendations for U.S. children. Several attendees left the meeting concerned that infants might be receiving too much mercury from vaccines. Although they were largely reassured by studies of children who had ingested large quantities of mercury from fish in their diet, they couldn't find a single study that compared neurologic outcomes in children who had received thimerosal-containing vaccines with those in children who had not.

On July 9, 1999, after much wrangling, the CDC and AAP decided to exercise the precautionary principle. They asked pharmaceutical companies to remove thimerosal from vaccines as quickly as possible; in the interim, they asked doctors to delay the birth dose of hepatitis B vaccine in children who weren't at risk for hepatitis. A press release issued by the AAP revealed the ambivalence among its members: "Parents should not worry about the safety of vaccines," it read. "The current levels of thimerosal will not hurt children, but reducing those levels will make safe vaccines even safer. While our current immunization strategies are safe, we have an opportunity to increase the margin of safety." Critics wondered how removing something that hadn't been found to be unsafe could make vaccines safer. But many parents, frightened by a sudden change in policy, reasoned that thimerosal was targeted because it was harmful — and their faith in the vaccine infrastructure was shaken. Doctors were also confused by the recommendation.

So what does all this mean? It suggests that doctors who were in a position to give advice about the safety of vaccines faced a moment when they had to try to communicate to the public both their vigilance on the matter of mercury contained in the vaccine preservatives and to express reassurance about the safety of an essential public health vaccination program. In retrospect, it reads like a very difficult challenge to communicate both ideas at the same time.

And, Offit notes, the pediatricians made a difficult situation worse with their ambivalent words. "The thimerosal controversy should stand as a cautionary tale of how not to communicate theoretical risks to the public; otherwise, the lesson inherent in the collateral damage caused by [thimerosal's] precipitous removal will remain unlearned."

Even if you disagree with Offit's characterization that removing thimerosal from vaccines is precipitous, it's likely that you can understand why vaccines are an issue fraught with emotion and tension for the autism community searching for answers, understanding and causes for their loved one's condition.

Policy makers and the research establishment seem to understand this, too. And so the medical community continues researching the issue. You can read the abstract to the latest study, by William W. Thompson Ph.D. and 17 other researchers with CDC backing publishing a study in the same issue of The Journal titled, "Early Thimerosal Exposure and Neuropsychological Outcomes at 7 to 10 Years" which looked at 1,047 kids and found 42 with neuropsychological conditions (without assessing whether any had autism spectrum disorders). It concludes: "Our study does not support a causal association between early exposure to mercury from thimerosal-containing vaccines and immune globulins and deficits in neuropsychological functioning at the age of 7 to 10 years."

This result echoes some other studies, but the trouble is that trust is hard for some advocates to find. And the voices of parents who distrust the research establishment don't hesitate to launch critiques. Cindy Waeltermann, director of AutismLink.com, an advocacy group which has opened an autism services center in Pittsburgh, criticized the researchers for not assessing whether the 42 kids with abnormalities detected had autism, and added:

The study assessed ONLY those children who were exposed to mercury during the first 28 days to 7 months of life. The autism community has always asserted that autism is caused by a build up of mercury in the system as a result of multiple vaccinations over the first two years of life. This study did not address this hypothesis. ... The CDC, which is supposed to be the quintessential research organization of modern times has once again proven its fallibility.... This study was geared to a particular outcome before it even began.